A Road Less Travelled – Living with Neuroendocrine Cancer

So, what is this thing called a Neuroendocrine Tumour?

Now that I have introduced myself, and had a such a a lovely welcome from everyone with my first blog, Thank you:-) I thought that I would provide a bit more detail on my condition. Bearing in mind that I am only 5 weeks in, and have a case of information overload, I will try to explain as best I can. So please bear with!

In my case I have a Gastrointestinal Neuroendocrine Tumour in my small intestine (Ileum) and has metastasised into my liver, and below is a cut of the NET Patient Foundation explanation for this:

“These tumours are often slow-growing, which makes diagnosis in the early stages difficult. Patients may present with carcinoid syndrome, bowel obstruction or abdominal pain, but this may be at a time when the disease has already metastasised. About 20% of patientswith a NET of the ileum have ‘carcinoid syndrome.“

My intestinal tumour is currently 1.6cm, and I have 10 tumours in my liver of which the biggest is 9mm. The liver tumours are scattered not grouped, and due to size were very difficult to detect. They were seen during my biopsy, as they had not been picked up by the previous octreotide scan, a scan which uses a mildly radioactive dye designed to attach itself to the surface of the tumour and light them up. If they are less than 1cm though, it does not always attach as they are to small, and this is what happened with me. So the liver tumours were a big surprise as all my other tests had not indicated that there was anything wrong with my liver, it was functioning fine. But from what I have read this is not uncommon.

As part of this I have the carcinoid syndrome (not everybody with NETs will experience this), this includes flushing, diarrhoea, wheezing, abdominal pain, fatigue and skin changes. So far I have not experienced the wheezing, but cannot be sure as I do also have asthma, and apart from a rash last year no skin problems.

In the last two years these symptoms have put me in A&E a few times, and over the last 12 months they have become a regular occurrence, every couple of weeks or so. This would wipe me out physically for a good few days afterwards, and was starting to impact quite badly on my family, social and working life. One of the things my husband and myself love to do is walking, but my stamina and pace were suffering, and sometimes it was also triggering the symptons.

As far as my treatment is concerned, I now have a multi-disciplinary team looking after me at the hospital, which includes an endocrine consultant, oncologist and specialist nursing team, at the moment. I started straight away on a course of injections which I had to administer 3 time a day for 28 days. A less concentrated form of the monthly injection (Lanreotide) that I will need for life, the 28 day course is designed to prepare my body for the monthly injections, and to ensure that I am ok with it. These injections will inhibit the production of the hormones that feed the tumours, and should help to alleviate my symptons.

I had my first monthly injection on Friday, and so far so good. Although I must admit, when I saw the size of the box I was a bit worried, luckily I don’t have a problem with injections, but had never seen anything like this before outside of a joke shop! Thankfully the injection did not hurt, although the site is a bit tender now, and I felt a quite lightheaded for a while afterwards, I am also very tired today. So now it is just a matter of watch, wait and monitor to ensure I am on the right dosage, and that there are no additional symptoms appearing. I have another scan in 6 months time to assess how the tumours are responding size wise, so no other treatment outside of the injections is planned for now.

What I can tell you though, is that I am extremely glad that I now have a diagnosis, and that I can now move forward. Maybe not quite in the way I had envisioned, but as many people will tell you, I do like a challenge…

Your earlier blog was a bit of a breakthrough moment for me as it was the first time that I shared something about NETs on Facebook, so thank you for that. I agree about the importance of the correct diagnosis – the problem I’ve found with NETs is that it is easy to attribute symptoms with something else. It was a great relief to be put under the care of specialists – I found that I was able to take stock and move on. My experience with the monthly injections was that the improvement was almost immediate – hope the same will apply to you. Best wishes.

Hi Richard, I am so glad that you found my blog helpful, that means a great deal to me, and totally agree about the symptoms, so much falls into place with the diagnosis. Hopefully I will follow your example with the injections.